Movement

In less than a week, I have gone from a meeting with a senator to spending 2 hours on the phone with an administrator at our state protection and advocacy center to a plan of action and the possibility of meeting with someone important at our state department of education whom I can't seem to find in any of the organization charts.
E-mails have been sent to various lists, and stories about the misuse/overuse of seclusion and restraint are starting to filter in from other families around the state. No turning back now.

2008 Disability Rights Legislative Day

A good opportunity to speak with Missouri legislators regarding the abuse and misuse of seclusion and restraint.

2008 Disability Rights Legislative Day
March 26, 2008
Missouri State Capitol
Jefferson City, MO

More information and RSVP here.

Me, Hubby, and the boys will be there. Will you?

Autism Every Day

Watch this movie, if you haven't yet. Form your own opinion of course, but mine is below in the feedback I emailed to Autism Speaks.

While I appreciate the point that autism changes a family’s life, this movie gave me a feeling of devastation and hopelessness as opposed to appealing for support and understanding. As a mother of two children on the spectrum, I would never speak about my children’s neurodisabilities in front of them in such a heart-wrenching, discouraging way...nor would I want them to be exposed to any predetermined expectations of what they won’t achieve in their lives. No parent has any right to set limits on a child with or without disability.

How we as parents ‘deal with’ our children’s autism should not determine their worth as human beings. I’m much more concerned about the message I’m sending to my children than one I’m sending to an onlooker. As I tell my family and friends, support our family, try to understand our family, but don’t pity our family.

We have bad days…some days are really really bad. We have good days…some days are really really good. Yes I left my career, my life has changed, priorities have changed, my marriage has been through hell and back, etc. But my most difficult struggle is supporting and helping my children without trying to “fix” them. I haven’t given up my life for my children, I have instead discovered what life is really about.

"Do not try to fix me because I am not broken."

My first exposure to this credo was in a Partners in Policymaking class. It was in a video and the words were flashed in silence.

My favorite line from this credo is "Do not try to fix me because I am not broken. " I cried when I read these words, and I felt a sudden, desperate release of pressure and stress. I hadn't realized it until that very moment that my life was centered around 'fixing' Bubba and Moose. The unfairness to them and my unwillingness to see them as perfect for who they are became glaringly obnoxious. Reading that statement was one of my most life-changing moments. I remember where I was, who was in the room, and everything I was feeling emotionally and physically.

Today I was preparing packets for my legislators, and thought this credo as appropriate to include. Read it. Send it to everyone you know. The message might not get you now, but it will catch up to you later...when you're ready. I'm not sure who wrote this, but I thank them.

“A CREDO FOR SUPPORT”

Do not see my disability as the problem.
Recognize that my disability is an attribute.
Do not see my disability as a deficit.
It is you who sees me as deviant and helpless.
Do not try to fix me because I am not broken.
Support me. I can make my contribution to the community in my own way.
Do not see me as your client. I am your fellow citizen.
See me as your neighbor. Remember, none of us can be self-sufficient.
Do not try to modify my behavior.
Be still and listen. What you define as inappropriate may be my attempt to communicate with you the only way I can.
Do not try to change me, you have no right.
Help me learn what I want to know.
Do not hide your uncertainty behind “professional “distance.
Be a person who listens and does not take my struggle away from me by trying to make it all better.
Do not use theories and strategies on me.
Be with me. And when we struggle with each other,
let that rise to self-reflection.
Do not try to control me. I have a right to my power as a person.
What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.
Do not teach me to be obedient, submissive, and polite.
I need to feel entitled to say NO if I am to protect myself.
Do not be charitable towards me. The last thing the world needs
is another Jerry Lewis.
Be my ally against those who exploit me for their own gratification.
Do not try to be my friend. I deserve more than that.
Get to know me. We may become friends.
Do not help me, even if it does make you feel good.
Ask me if I need your help. Let me show you how you can best assist me.
Do not admire me. A desire to live a full life does not warrant adoration.
Respect me, for respect presumes equity.
Do not tell, correct, and lead.
Listen, support, and follow.
Do not work on me.
Work with Me.